Privacy Guidelines For Genetic-Testing Sites Touted As ‘Step Forward,’ But They Don’t Address De-Identified DNA
Samples that are stripped of any identifying details are extremely lucrative to pharmaceutical companies and other medical organizations, but the consumers have no way of knowing when their data is used. In other public health news: birth defects, Ebola, scooter injuries, brain surgery, and more.
Bloomberg:
‘Glaring Gap’ Seen In DNA Privacy Pledges By 23andMe, Ancestry
Genetic-testing companies that have decoded the DNA of millions just introduced new guidelines to protect data privacy. But those best practices failed to address a major concern: what happens to customers’ data that is shared for research with pharmaceutical giants, academics and others, often for a profit. Just how lucrative the business of genetic testing is came into light last week when British drugmaker GlaxoSmithKline Plc agreed to buy a $300 million stake in 23andMe Inc., gaining access to anonymized data with the hope of identifying new targets for drugs. (Brown, 8/2)
Reuters:
Cashing In On DNA: Race On To Unlock Value In Genetic Data
How much is your DNA worth? As millions of people pay for home tests to check on ancestry or health risks, genetic data is becoming an increasingly valuable resource for drugmakers, triggering a race to create a DNA marketplace. GlaxoSmithKline's decision to invest $300 million in 23andMe and forge an exclusive drug development deal with the Silicon Valley consumer genetics company crystallizes the value locked up in genetic code. (Hirschler, 8/3)
Stat:
Scientists Find New Clue To How Thalidomide Caused Devastating Birth Defects
Scientists have found a new piece of the puzzle about how the drug thalidomide caused devastating birth defects in thousands of children whose mothers took the drug while pregnant more than 60 years ago. Dana-Farber Cancer Institute researchers reported this week in eLife that the drug triggers the degradation of a slew of transcription factors — proteins that help flip genes on or off — including one called SALL4. That doesn’t come as a total surprise: SALL4 has long been seen as a likely suspect in the chain of events that led to the birth defects because mutations in the SALL4 gene can cause developmental problems in patients with a disease called Duane-radial ray syndrome. The condition can lead to underdeveloped limbs, eye and ear defects, and heart issues — the hallmark signs of exposure to thalidomide in the womb. (Thielking, 8/3)
Stat:
Ebola Outbreak In DRC Sets Up Another Test For Experimental Treatments
In the world of Ebola outbreaks, lucky breaks are few and far between. But it appears the Democratic Republic of the Congo may have caught a small one in its latest go-round with the dangerous disease. And it might also give the world another shot at testing an experimental Ebola vaccine. Officials in the DRC said Thursday that testing has shown that the virus causing disease in North Kivu province in the northeast of the country is Ebola Zaire. That is the virus targeted by Merck’s experimental vaccine, which was tested during the West African outbreak in 2014 and 2015, and used in eastern DRC in an outbreak earlier this year. (Branswell, 8/3)
The New York Times:
Health Officials Prepare To Track Electric Scooter Injuries
A hospital conference room is an unlikely place to assess a budding transportation revolution, but a team of San Francisco trauma specialists and researchers who gathered there sees its work as essential to ensuring the safety of residents in a city of high-tech guinea pigs. “We don’t know what we don’t know,” Dr. Catherine Juillard, a trauma surgeon at Zuckerberg San Francisco General Hospital, said during the meeting in late June. (Berman, 8/2)
The Washington Post:
Tanner Collins Had One-Sixth Of His Brain Removed To Extract A Tumor And Stop His Seizures
It was a solution no parent wants to hear: To get rid of a brain tumor and stop their young son's seizures, surgeons would need to cut out one-sixth of his brain. But for Tanner Collins, it was the best option. A slow-growing tumor was causing sometimes-daily seizures, and medications commonly used to treat them did not seem to be working, his father said. But removing a portion of his brain was no doubt risky. (Bever, 8/2)
Kaiser Health News:
Doctors Reckon With High Rate Of Suicide In Their Ranks
Alarms go off so frequently in emergency rooms, doctors barely notice. And then a colleague is wheeled in on a gurney, clinging to life, and that alarm becomes a deafening wake-up call. “It’s devastating,” said Dr. Kip Wenger, recalling a 33-year-old physician and friend who died by suicide in 2015. “This is a young, healthy person who has everything in the world ahead of them.” (Farmer, 8/3)
The New York Times:
Cellphones And Crosswalks: A Hazardous Mix
Pedestrians who are using their phones cross the street at a slower pace than others, a new study has found, a behavior that may increase their risk of being hit by a car. Regardless of whether they’re talking on the phone or texting, distracted pedestrians using phones take smaller steps and walk in a more erratic fashion when crossing the street than those who aren’t on their phones, the study found. (Rabin, 8/2)
NPR:
A Leader Makes Decisions For Self And Others The Same Way, Research Suggests
Leaders can have many different styles — just compare President Donald Trump to Malala Yousafzai to your boss or the coach of your kid's soccer team. But a study published Thursday suggests that people who end up in leadership roles of various sorts all share one key trait: Leaders make decisions for a group in the same way that they make decisions for themselves. They don't change their decision-making behavior, even when other people's welfare is at stake. (Greenfieldboyce, 8/2)
